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Farewell to Steve Silberman

13 Nov

For those who don’t know, Steve Silberman passed away recently. I’ve been trying to find a good way to write about his passing here. Steve wrote Neurotribes, a book which changed the way people see autism. For that I will always be grateful. He was a great science journalist, an expert on the Grateful Dead and other music and so much more.

His family and friends held a life celebration for Steve and I’ve linked to it below. The video will only be live for a short while, so don’t put off watching it. People who knew Steve much better than I and people who were much closer to Steve spoke and did a much better job than I ever could, so I will keep this brief.

If you watch the video you will hear people talk about all the amazing things Steve did. And they were amazing. But they spent most of their time talking about what a good human Steve was. That church was packed because a lot of people sincerely loved Steve.

I commented to a friend recently, “Ever notice that all the pictures people share of Steve have Steve hugging them?”

I can’t think of a better example of a successful life. Be excellent in what you do, and that includes being a beautiful human being.


By Matt Carey

Robert Kennedy isn’t just weird. Apparently, he’s also creepy.

4 Oct

Robert Kennedy (RFK Jr) has been a parasite on the autism community for decades. In that time he has failed to impress on scientific acumen and integrity. Recent news articles have shown Mr. Kennedy to make very questionable choices. Such as leaving a dead bear cub in central park and transporting the head of a dead whale on the roof of his car. But a story out today, if true, shows Mr. Kennedy to be beyond weird. He may be a slimy creep.

Recently, a journalist was put on leave for having a relationship with Mr. Kennedy. The “relationship” is reported in a few outlets (e.g. here at the NY Post) and I’m not going to reprint the details. So, he cheats on his wife. Well, America decided that’s no big deal when they elected Donald Trump as president. So, why do I claim Mr. Kennedy is a creep?

A recent story reports that Mr. Kennedy has been carrying on affairs with at least three women at his charity, “Children’s Health Defense”. CHD is the descendent of the “mercury militia” orgs of the past. Who are the women involved? Are they autism moms?

Do I find these accusations plausible? There have been rumors for a long time that the charlatans preying financially on autism moms at the “conferences” they hold have taken advantage of these same autism moms. And, frankly, if true the idea is worse than creepy.

But here’s the thing. Yes, charlatans have been bilking autism families out of money, a lot of money, for decades. Yes, there are rumors that the “luminaries” of the anti-vaccine movement have taken advantage of vulnerable autism moms. And these stories will make the news. But these “luminaries” have been behind promoting (directly or indirectly) fake “therapies” that amount to nothing less than the abuse of disabled children. And, for some reason, that doesn’t make news.

———

by Matt Carey

Team Trump, ever classy, stigmatize people with mental illness to excuse their own bad behavior

28 Aug

NPR reports Trump campaign staff had altercation with official at Arlington National Cemetery. Apparently, members of Mr. Trump’s team chose to disrespect on of America’s most sacred places:

A source with knowledge of the incident said the cemetery official tried to prevent Trump staffers from filming and photographing in a section where recent U.S. casualties are buried. The source said Arlington officials had made clear that only cemetery staff members are authorized to take photographs or film in the area, known as Section 60.

Mr. Trump’s spokesperson, Stephen Cheung, gave NPR a statement:

“The fact is that a private photographer was permitted on the premises and for whatever reason an unnamed individual, clearly suffering from a mental health episode, decided to physically block members of President Trump’s team during a very solemn ceremony,” Cheung said in the statement.

Not only did Mr. Cheung try to deflect blame for the incident, he did so while blaming someone “clearly suffering a mental health episode”. I get politicians lying and trying to dodge blame. It’s what they do. And Mr. Trump never, ever, ever accepts blame or admits a mistake. I get that. I expect this from Mr. Trump. But, seriously, Mr. Cheung, why did you have to drag people with mental health issues into this story? Seriously, you can lie without stigmatizing people.

But first you should wake up and care about stigmatizing people, Mr. Cheung. I get it, you work for someone who has repeatedly mocked people with disabilities. On one notable occasion, he doing a standard retard“. Because always mocking people with disabilities is a good defense?

OK, Mr. Cheung. You work for a jerk. You have a choice, you know.

For people wondering about whether Mr. Trump’s team had the right to film what was obviously a campaign stop at Arlington, NPR reports:

“Federal law prohibits political campaign or election-related activities within Army National Military Cemeteries, to include photographers, content creators or any other persons attending for purposes, or in direct support of a partisan political candidate’s campaign,” according to the statement. “Arlington National Cemetery reinforced and widely shared this law and its prohibitions with all participants.”

The people in the disability communities, and by that I include people who love people with disabilities, vote. We may not have carried the day in 2016, but that doesn’t mean we won’t have an impact in 2024.

By Matt Carey

Robert Kennedy dodges his support for the failed autism/vaccine link

25 Aug

I’ve been watching Robert Kennedy (RFK Jr.) for nearly 20 years now. Watching him closely. As I recently wrote: “expanded mission” of the World Mercury Project, an organization built on the failed idea that autism is caused by mercury in vaccines.

But, back to Mr. Kennedy’s video. He thinks people are “most confused about my stance on vaccines”. So he wants to go “point by point” into his “exact posture”.

Mr. Kennedy plays the game, “It’s controversial to say vaccines have side effects”. As in, “my position is only that there are side effects”. Nope. He believes, to this day, that mercury in vaccines cause autism. 20 years ago it was a weak hypothesis. Now it is an idea that has been demonstrably refuted. Over and over. But Mr. Kennedy has never accepted the data. He’s never apologized for the harm he caused by promoting an idea that autistic people are damaged.

He’s gutless. He’s a coward. He’s a politician who knows that saying what he believes will harm his chances to get elected. So he hides behind the idea that all he’s saying is that there are adverse effects to vaccines. And then he uses an old video of Bernadine Healy where she talks about vaccines and autism.

Grow a backbone, Mr. Kennedy. Say what you want to say.

He does throw out an old video of Bernadine Healy saying “no one studied the kids who got sick”. As an aside, being autistic isn’t “being sick”. It’s also an outdated statement. Way back in I did some of that recently.

But just let me say again: the man is gutless. He didn’t address his primary issue: vaccines and autism. He dodged it. He’s just doing the usual bad politician gimmick of using code-phrases to keep his loyal followers in line while trying to not alienate other people. He tried to paint himself as just a guy asking important questions, when in reality he’s a guy whose questions have been answered, over and over (and over and over and over again), but he refuses to accept the answer. He knows his positions is extreme, so he hopes he can fool people into not looking closer.

He’s wrong. He’s extreme. If Donald Trump were a great guy in all other respects (he’s not even close), taking Mr. Kennedy on as part of his team would be enough to vote against him.

Or, to put it another way, it would take a lot to make Donald Trump an even worse candidate than he is. Mr. Trump found a way. He brought Mr. Kennedy into his tent.



By Matt Carey

Donald Trump: Disabled Americans “Should Just Die”?

25 Jul

Fred C. Trump III has an article in Time Magazine out: “ALL IN THE FAMILY: The Trumps and How We Got This Way“.

What is the context of this quote, “Should just die”? I’d strongly suggest reading the article, but it comes down to this: Donald Trump’s nephew was able to get a White House visit to for a group of disability activists to speak with officials in the White House. This included Secretary of Health and Human Services Alex Azar. Again, I’d encourage you to read the article, but here’s one section that stands out:

Azar was still in the Oval Office when I walked back in. “Hey, pal,” Donald said. “How’s everything going

“Good,” I said. “I appreciate your meeting with us.”

“Sure, happy to do it.”

He sounded interested and even concerned. I thought he had been touched by what the doctor and advocates in the meeting had just shared about their journey with their patients and their own family members. But I was wrong.

“Those people . . . ” Donald said, trailing off. “The shape they’re in, all the expenses, maybe those kinds of people should just die.” 

I truly did not know what to say. He was talking about expenses. We were talking about human lives. For Donald, I think it really was about the expenses, even though we were there to talk about efficiencies, smarter investments, and human dignity.

I turned and walked away.

We already know Mr. Trump is no friend to the disability communities. From disparaging disabled veterans (“A person that did not want to be seen in the presence of military amputees because ‘it doesn’t look good for me.’ ), the pattern is clear. But, this was his own family. And Trump thinks his own grand nephew should, “just die”.

It’s hard enough to get support for people with disabilities in America. Can we really afford another Trump presidency? Pick and issue that’s important to you. If you are disabled or love someone who is disabled, what issue could mean more to you than disabled people should just die?

By Matt Carey

Imagine Mr. Kennedy working in a Trump administration.

17 Jul

A leaked video shows Robert Kennedy speaking with Donald Trump. Media outlets are focusing on Mr. Trump playing to Mr. Kennedy’s anti-vaccine sentiments. A Trump/Kennedy conversation exchanging vaccine fearmongering is, frankly, not newsworthy in my opinion. The fact that a call happened is not either, to be honest. It would be appropriate for Mr. Kennedy to speak to Mr. Trump following the assassination attempt. We don’t have the full conversation in the video, so we don’t know who initiated the call or why. Mr. Kennedy says the main message was “national unity”

But here’s the part that I worry about:

Trump also appeared to appeal to Kennedy, though it’s unclear for what exactly. “I would love you to do something,” Trump said, without offering further context. “And I think it’ll be so good for you and so big for you. And we’re going to win.”

Allow me to sidestep the “I would love you to do something” comment and focus on what Mr. Trump means by “so good for you and so big for you”. Most likely it’s Mr. Trump offering vague and empty promises. That would be very on-type for Mr. Trump. But, this will read to Mr. Kennedy’s followers as a possible open door to some sort of appointment in a Trump administration. They have speculated in the past about Mr. Kennedy running FDA or CDC. Which again would be very on-type for Mr. Trump’s planned second term: replacing people with competence with loyalists. Mr. Kennedy is unlikely to be a fierce loyalist, in my opinion. But, as a “burn it down” appointee, Mr. Kennedy might serve Mr. Trump’s vision well.

I am just amazed that Donald Trump is a viable candidate. His performance his first term was…bad. His disregard for the foundation of democracy should be undeniable, but denialists abound. The idea that Mr. Trump could appoint Mr. Kennedy to some post shouldn’t be the tipping point in one’s vote. Mr. Trump is bad enough as it is. But, seriously, Kennedy + Trump is worse than Trump alone.


By Matt Carey

So, Mr. Kennedy does cancel some speaking engagements

13 Mar

I recently wrote about how Robert Kennedy Jr. is gutless (I’m an autism parent. No way I will vote for Robert Kennedy Jr.. He’s gutless).  Over the past few decades, Mr. Kennedy has spoken at many events where fake, even abusive, therapies are promoted to autism parents for use on their disabled children. As a keynote speaker, Mr. Kennedy could have either refused to attend or used his platform to distance himself from these charlatans. To my knowledge, he never has.

So I was a little surprised to read that Mr. Kennedy had pulled out of recent convention (Not Even RFK Jr. Wanted to Come to This Vegas Convention of Anti-Vaxxers and ‘Free Speech’ Brands). The Rolling Stone article states:

The result was more anemic than cohesive, however, in part because scheduled keynote speaker endorsed antisemitic comments on a prominent conspiracist’s streaming show. 

Good for you, Mr. Kennedy. Good for you. A speaker at the convention had endorsed antisemitic comments so you decided to not show up.

But this begs the question, why were you willing to speak when charlatans are preying on the families of disabled children? The example I gave in my previous piece was that of chemical castration. For those who didn’t read the piece, I’m not making this up or exaggerating.

Let me bring up another example. Bleach enemas. Charlatans sold (and still sell) chlorine dioxide (a bleach) as enemas and drinks to cure autism. Parents would give their kids bleach enemas, the kids would pass the lining of their intestines and people would say, “look, we got rid of the parasites that cause autism!” No, I’m not making this one up either.keynote speaker that year was Robert Kennedy.

Mr. Kennedy could have refused to speak. He could have spoken at the time that he disapproves of these therapies. He could have spoken out since then, demonstrating regret for lending his name and credibility to charlatans such as these.

To my knowledge, he never has.

That would have taken courage. And the ability to discern junk science. These are traits I have not seen Mr. Kennedy show often.

__

By Matt Carey

I’m an autism parent. No way I will vote for Robert Kennedy Jr.. He’s gutless.

26 Feb

As an example, I will discuss one particularly egregious “therapy” that was used on autistic children, the so-called “Lupron protocol”. Mr. Kennedy was in a perfect spot to stop or limit this therapy, but he never did. It would have taken courage, and, in my opinion, Mr. Kennedy is gutless.

Robert Kennedy (RFK Jr.) is running for president. He failed to gain the Democratic Party nomination and is now running as a third-party candidate. Since the beginning of his campaign, he’s faced criticism for being anti vaccine and anti-science. As someone who has watched Mr. Kennedy for nearly two decades I will agree: he is, indeed, anti-vaccine and anti-science. But that’s not why I am strongly against the idea of him being president. I oppose his bid for one reason:

He’s gutless.

Let me explain.

Long before Mr. Kennedy reached national prominence with his myriad of bad ideas during the COVID-19 pandemic, he was well known in the anti-vaccine autism-parent community. He was probably most famous for pushing the failed idea that mercury in vaccines caused an autism epidemic (an idea he still won’t abandon). And this is where many discussions focus on how his actions are anti-science and anti-vaccine. But to me, I hurt for the harms Mr. Kennedy’s advocacy has caused autistic people and the autism communities. One can say, “his anti-vaccine views have caused harm to public health”. One would be right. But, the anti-vaccine movement has long used autism and autistic people as the hammer with which they attack vaccines. And, to quote Sancho Panza in Man of La Mancha, “Whether the rock hits the pitcher or the pitcher hits the rock, it’s generally bad for the pitcher”. Being the weapon of choice for attacking vaccines has caused increased stigma and allowed charlatans to sell fake “cures” for autism which range from useless to abusive.

As an example, I will discuss one particularly egregious “therapy” that was used on autistic children, the so-called “Lupron protocol”. Mr. Kennedy was in a perfect spot to stop or limit this therapy, but he never did. It would have taken courage, and, in my opinion, Mr. Kennedy is gutless.

For decades there have been regular autism-parent conventions focused primarily on two things: promoting the idea that vaccines cause autism and promoting fake “cures” for autism as a vaccine injury. And Mr. Kennedy has been prominent at these conventions, serving as a keynote speaker.

Mr. Kennedy speaks primarily on the idea that vaccines cause autism (they don’t). He’s well respected as someone who has been involved for decades in this arena. His name gives some credence to the others at these conventions, including those who push abusive therapies.

I have never heard of Mr. Kennedy speaking out against the fake, even abusive, “therapies” pushed at these parent conventions. Why? In my opinion:

He’s gutless.

Allow me to focus on one of the most egregious fake therapies pushed as part of the vaccines-cause-autism movement. There are more. Many more. But let’s just discuss chemical castration.

If you are thinking, no way that happened, Matt. You must be exaggerating. I’m not.

Doctors were prescribing why not just castrate them“.

Surely they had a good reasoning for taking such drastic measures, you must be thinking. No, they didn’t. In fact, the “science” behind the therapy is horrifically bad. It would be funny if it wasn’t actually used on children.

How was the “Lupron protocol” justified? First, let’s start with the idea that autism is caused by mercury. It isn’t, but this is the idea that Mr. Kennedy pushed so hard 20 years ago. Mercury intoxication is commonly treated by chelation, which is a way to remove mercury from the body. For years medical practitioners pushed chelation on autism parents (again, often at these autism parent conventions that Mr. Kennedy is known to speak at). Only chelation didn’t work. It didn’t work because autism isn’t mercury intoxication. But to people like the Geiers, the problem was that chelation wasn’t working, the problem was they needed a better way to chelate. They came up with the idea that testosterone was binding to mercury and keeping chelators from working. So, they postulated, remove the testosterone and one can remove the mercury and the kid will stop being autistic. Which brings us to chemical castration: remove or reduce testosterone in the body. Which brings us back to Lupron.

Seriously, it happened. And a father-son team named Geier led the charge.

In order to prescribe the Lupron, the Geier’s needed a diagnosis. Insurance companies aren’t going to allow people to prescribe Lupron for mercury intoxication (even ignoring the fact that the Geiers didn’t have evidence for mercury intoxication). So the Geier chose precocious puberty as the diagnosis. Diagnose a kid with precocious puberty and you can prescribe Lupron.

The Geiers got into trouble for this. In 2013 they were facing disciplinary action as noted by blogger Todd W. at Harpocrates Speaks (among many others). They were facingmedical license suspension. In multiple states. So, you’d think people might be questioning the Geiers’ “protocol”. Perhaps checking the “science” that supported it? Well, not in Mr. Kennedy’s circles, apparently.

A few days after Todd W. wrote his article, two things happened. The Geier’s spoke at a parent convention called AutismOne. And Robert Kennedy was the keynote speaker for that convention.

Think about it. Mr. Kennedy could have told the parents at that convention that he stands apart from the Geiers. He could have just said perhaps people should be cautious, a relatively weak stance. Mr. Kennedy could have taken a stronger stance said that what the Geiers were doing was chemical castration and it was wrong, a much stronger stance.

To my knowledge Mr. Kennedy did not speak out then against the Geiers or any other practitioner of fake autism cures. I have no knowledge of him ever speaking out against charlatans.

It would have taken courage to speak out. It would have taken courage to admit to himself that he’d missed the obviously bogus science before, and that he, a self-professed science expert, was wrong. And it would have made a difference. I don’t consider it hyperbolic to say that I consider chemical castration of disabled (or any) children to be abusive. And Mr. Kennedy could have slowed or even stopped this practice long before Dr. Geier lost his license. He was respected and a frequent speaker at these conventions.

It takes courage to face allies (the Geiers were long known for pushing the mercury-autism link. Mr. Kennedy cites them multiple times in his books) and say they are doing wrong. Mr. Kennedy didn’t even have to admit that the mercury-causes-autism idea was false (which would have taken another step of courage and would have been the right thing to do). Just that chemically castrating disabled children is wrong.

Seriously, how hard is it to say, “Chemically castrating disabled children is wrong”, Mr. Kennedy?

Mr. Kennedy has spoken regularly at the “vaccines-cause-autism” parent conventions. And the Geiers were not the only ones pushing abusive therapies. It would have taken courage to say, “I will not speak and lend my name to a meeting where fake therapies are promoted.” But Mr. Kennedy lacks that courage.

This is largely due, I believe, to the fact that Mr. Kennedy lacks to courage to analyze his own lack of scientific expertise. My belief is that Mr. Kennedy, to this day, doesn’t understand just how bogus the “Lupron protocol” was. But it would take a courage for someone who has branded himself as a person who understands science (even though he lacks any credentials) to say, “You know what, I didn’t catch on to the idea that the science the Geiers were claiming was unsound.”

One might ask, was the Geier science obviously bogus? I would say yes and I would say that someone with the expertise Mr. Kennedy claims to have should have easily seen there was a problem very early on. Let me explain. The Geiers claimed that mercury and testosterone form “sheets”, large complexes, in the brains of autistic children. Sounds very scientific and all, until we found that the study the Geier’s were basing this idea upon involved boiling mercury and testoterone in benzine.

In my opinion, Mr. Kennedy should have known that a child’s brain is not similar to boiling benzine. Yes, this sounds snarky, but it really is that simple. The science behind the Geier’s “Lupron protocol” was really that bad.

But this discussion risks getting back into the realm of “He’s anti-science”. I bring this up not to point out Mr. Kennedy’s lack of science chops, but to point out that the science was so bad that it didn’t really take much analysis to see it.

That is if one has the courage to question. To question one’s allies. To question one’s own expertise. To question whether one’s own inaction led to the abuse of disabled children. And, again, in my opinion this was abuse. And Mr. Kennedy could have helped stop it sooner.

Again, I only picked one example. And this discussion has gone long, so you can understand why I chose only one example. But there are many examples of fake cures promoted at autism-parent conventions that Mr. Kennedy could have stopped. There’s also a lengthy discussion we could have about the stigma the anti-vaccine movement has brought to autistic people (one of Mr. Kennedy’s allies tried to label autism as “mad child disease“, to give you one example.) Mr. Kennedy could have spoken out agains the stigmatizing language. But the fear of autism and autistic people has long been a mainstay of the anti-vaccine movement.

We need a president with courage. While others discuss his anti-vaccine views, his near self-delusional belief in his scientific acument, let me just say this again: Mr. Kennedy lacks courage.

Robert F. Kennedy Jr. is gutless.

_____

By Matt Carey

More discussions
Mark Geier’s Wikipedia Page.


Before I Go

25 May

There’s the ghost of a girl I’ll never be
Before I go, let go of the ghost
Just let her disappear
And then maybe you’ll see me
While I’m still here
I’m still here

The musical Kimberly Akimbo has been nominated for multiple Tony Awards. The show is about a 15 year old girl who has a rapid aging disease (it’s a fictitious condition.) She’s not autistic, but a message in one of her songs reminded me of what I’ve heard a lot of autistics say they feel.

Kimberly asks her parents to acknowledge that she wasn’t the daughter they wanted. That their house is haunted by the ghost of the girl that they did want. Kimberly asks her parents to see her as she is.

Here are the full lyrics. Patti and Buddy are Kim’s parents. All three of them are quoting earlier songs of theirs in the last verses here.

[KIM]
I was never the daughter you wanted
That’s the thing we never say
But that’s the truth and that’s okay
We live in a house that’s haunted
There’s always you, there’s always me
And there’s the ghost of a girl I’ll never be

There’s the ghost of a girl I’ll never be
Before I go, let go of the ghost
Just let her disappear
And then maybe you’ll see me
While I’m still here
I’m still here

I was never the girl you intended
She was young and she was bold
She’d hold your hand when you got old
Let’s admit, the dream has ended
And what you wished for wasn’t me
It was the ghost of a girl I’ll never be

She’s the ghost of a girl I’ll never be
Before I go, let’s give up the ghost
Just he with me instead
I know I might be dying
But I’m not dead
I’m not dead

So before I go, take my hand
Before I fly away, say goodbye
I will go somewhere that’s beautiful
I’ll go somewhere that’s beautiful
It’s time let me go

[PATTI]
Father Time

[KIM]
Let me go

[PATTI]
Slow down the day

[KIM]
Let me fly away

[PATTI & (BUDDY)]
Don’t let the dark come in (You have your whole live)
Steal it away

[KIM]
It’s time

[PATTI & (BUDDY)]
For goodness sake (Your whole life)
You’re still awake

[BUDDY]
See the world
See the world
See the world

[PATTI]
And baby wants to play
And baby wants to play

[KIM]
Oh
Dear Make a Wish Foundation of New Jersey
As you probably know by now
My name is Kimberly Levaco
Thank you for the treehouse
But I don’t need a treehouse
I’m gonna bungee jump
I’m gonna jet ski
I’m gonna hang glide and clog dance
And swim at the bottom of a waterfall
In New Zealand

I’ll see the world
See the world
See the world
Smiley face

Flu vaccine given to pregnant women doesn’t cause autism. Is anyone surprised?

3 Mar

I happened to run across this study from last year: Maternal Influenza A(H1N1) Immunization During Pregnancy and Risk for Autism Spectrum Disorder in Offspring : A Cohort Study and thought it worth highlighting. The anti-vaccine movement has been good at moving goalposts and one of their lines in recent years has been that vaccines are dangerous for pregnant women. One line of “logic” holds that as mercury was phased out of vaccines, the influenza vaccine was given to pregnant women. Thus, we are told by anti-vaccine activists, explains why there was never their predicted drop in autism rates as thimerosal was phased out of vaccines.

The conclusion of the study is one line:

This large cohort study found no association between maternal H1N1 vaccination during pregnancy and risk for ASD in the offspring.

Will this convince the remaining anti-vaccine activists? Of course not. Is this surprising? No.

But it is worth noting another study which debunks their dangerous misinformation.


By Matt Carey

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